Tag

spoonie

Browsing
In Chronic Illness

Diagnosis is not the end of the story…

No Comments

Recently, after another hospital letter landed on the doormat, it was time yet again for a visit to the consultant neurologist, whose care I am under in the attempt to shed some light on the medical mystery that feels has become my life.   The beginning of the appointment was the benign initial chat on how I have been feeling since the last appointment (a really short time to cover a year in just a few minutes!) and the regular neurological examination, including testing of my reflexes, a not so favourite as it always produces the most violent of spasms, increasing the trembling in the legs ten-fold and increases the weakness in them.

After the standard neurological examination was completed and the consultant thoroughly reviewed my extensive notes, which almost resembled the length of a novel and eventually came up with a diagnosis – Functional Neurological Disorder.

For those, who may not have heard of this condition before, a functional neurological disorder is a condition in which a patient such as myself experiences neurological symptoms such as weakness, movement disorders, sensory symptoms or blackouts.  Patients exhibiting signs of a functional neurological disorder, however, shows no signs of structural abnormalities but is rather a problem with how the brain functions.

It is a problem with how the brain is sending or receiving messages.

If we imagine the brain to be a computer, then conditions such as MS or Parkinson’s Disease would be a problem with the hardware, whereas functional neurological condition is a problem with the software.  Just as a computer crashes or becomes extremely slow due to a software bug, neurological symptoms arise when there is an interruption in the messages being sent or received by the brain.

There is much debate on what exactly causes the dysfunction of the nervous system.  Some suggest that there is a psychological component which manifests itself in a physical manner, but is merely a theory to why these symptoms occur.  I suppose that this is one of the most frustrating aspects of being diagnosed with this condition; yes, it’s a label that explains the experience in terms of my physical health, however, there are so many questions that cannot be answered.  Reading the literature on this condition there are words such as possible and probable and no definite answers or explanations for the development of this condition.

As I read more and am left with no real answers to my questions, I often wonder if the acronym of FND should really stand for ‘For No Diagnosis’.   And with no such answers, how can we as patients be confident of the diagnosis?  Is it a merely a label that doctors grasp at when they cannot find a definitive explanation of our symptoms?  In my experience, the consultant almost pulled this diagnosis out of thin air.

Interestingly most of the anecdotes from others diagnosed with Functional Neurological Disorder describe how their symptoms often started out of the blue, like being struck by a bolt of lightning after which realising life will never quite be the same again.  However, this was not the case for me, as what started off as minor symptoms slowly became more and more severe, as well as the introduction of new symptoms which was progressive in the same way as the original symptoms.

And there is the big puzzling picture of the early days of my life when the doctors thought there was something wrong with me after I was born, leading to a brain scan at two days old.  Growing up, I always complained about my pains in my legs which was worrisome to me but this was brushed away with reassurances they were merely growing pains.  Surely, these must be important pieces of the puzzle that surrounds my symptoms?

Sometimes a diagnosis can lead to more questions than answers
Sometimes a diagnosis can lead to more questions than answers

So what now?  Well, once again I have been referred to specialists for vestibular therapy to help with the dizziness and vertigo.  A therapy that I am no stranger to having been through it several times before.  I am not sure how I feel about this, initially, I was reminded of the famous quote by Albert Einstein, “Insanity is doing the same thing over and over again and expecting different results.”    Do the doctors think that now I have a label, therapy will magically work when in the past it had no effect on my symptoms?  But, although I am initially skeptical I will always try my hardest and will try anything for even the smallest of improvement to the debilitating effects of dizziness and vertigo.

I have also been referred to a specialist neurological hospital in London for a second opinion and to see if the consultants there can come up with any answers and more importantly ideas on how to treat or even manage the symptoms that more often than not run the show of my life!

Through my experiences, however, I have learned that even after getting a label, diagnosis is not the end of the story…

by
Keep Reading
In Chronic Illness

A New Chapter Begins…

No Comments

It’s been so long since my last post.  In the time during my absence, a notable change has occurred – the end of one decade of my life and the beginning of another one, yes, since my last post two months ago I have turned 30 years of age!  Of course, the occasion was somewhat low-key, opting for a spa break consisting of being pampered instead of a large party with family and friends which could only exacerbate new feelings of fatigue, and which flashing lights and loud music would be intolerant for the dizziness and vertigo that are already problematic.
spa-2-1411714
It’s funny that when on the precipice of such a milestone is the reflection, not just on the past thirty years of one’s life but a reflection on future plans and the possibilities that lie ahead for the next thirty years.  Then there is the barrage of questions that people pose on such occasions, such as “How do you feel?” or “What are your plans now?” It’s as if people view these birthday milestones, such as turning 30, 40, 50 as a beginning of a whole new chapter of our lives.  The past finished within the pages of previous chapters and we are reborn as whole new characters in the story of our lives with endless opportunities that await us in the big wide world.
thirty
When living with a neurological condition, or other chronic illnesses, however, the view is very much different…for us, these milestones are not the precipice for change and unfortunately are not reborn with a new future and endless possibilities awaiting us.  Our bodies are still very much broken and the symptoms that tormented us during the previous chapters that are the story of our lives still very much exist.

Pain, fatigue, dizziness amidst the other symptoms that I live with was unaware and didn’t care that it was my thirtieth birthday and they still made their presence felt on a day that was mine.  And even since, my thirtieth birthday the promise of a new beginning and chapter has proved to be unfruitful, and the symptoms have been unrelenting as ever.

This has especially been true regarding the pain and trembling in both of my legs.  Recently, I read a book that described the pain as a universal human experience.  Whether the pain is a physical sensation or through emotional turmoil, pain is something that we will all experience during our lives.

And I totally agree, but although we are all united in the shared experience of pain, isn’t it funny that when we are in the midst of experiencing pain, it feels like an entirely lonely place? This was the case during our recent spa break, when I found myself, in the early hours of my birthday, in excruciating pain while sharing a twin room with my Mum who was sound asleep.

Preparing to start writing a new chapter
Preparing to start writing a new chapter

Trapped in a body where the pain is ravaging my legs, in unfamiliar surroundings and during the early hours of the morning where everything was still and silent,  felt completely alone as if I were the only person alive experiencing pain.  Of course, I am not and visiting social media sites such as Twitter and reading the posts from others emphasises the realisation that I am not alone in the fight against chronic pain and that there is an unwavering amount of support from those who understand and live with pain themselves.

It was not just the pain however that has made me feel lonely and isolated as of late, but also the severe trembling of the legs that has often rendered me unable to venture far from wherever I am at the time.  More time being spent lying on my bed reading or watching TV programmes or films on my iPad.  Even going out, more time is spent sitting in coffee shops enjoying the warm, luxurious taste of hot chocolate while talking with whomever I’m with or spending some time reading.  Anything but traipsing around shops as legs often feel like they are too weak to support my weight.  This has been particularly emphasised by the number of times my legs have collapsed from under me leading to some rather embarrassing falls in public.

The pain and trembling it seems has made my world smaller once again.  Perhaps that is why I have found myself reading more books in recent times, as the stories that I am reading is able to take my mind to new places when my body is limiting to the places that I can physically visit.

In our lives we find that a lot of chapters close and new ones begin, waiting to be written but certain elements within our personal journeys remain, such as living with a neurological condition, chronic illness or disability as an example.  However, that is not to say that they have to dictate our narrative, or that the narrative cannot change. It just means that we need to take over the reins of the journey and find ways to take back our control and new ways to cope with the obstacles that are in our way.  As the esteemed writer, Nora Ephron famously said: “Be the heroine of your life, not the victim.”
images
And as I wave goodbye to my twenties and enter a new decade of my life, I hope to become the heroine of my own story, to look forward to the future and the new possibilities and opportunities that lie ahead…

by
Keep Reading
In Chronic Illness

A New Normal…

3 Comments

For a couple of days this week, imagine my surprise that I awoke to no trembling or even pain in my lower limbs.  None of the severe shakiness that makes me feel that I am balancing on jelly.  No sign of the often debilitating pain that feels as if my legs are being squeezed in a vice, and which makes me wish that I could tear my legs off and discard them as many young children do with their dolls.

For these couple of days, my immediate thoughts after waking and realising that neither of these disabling symptoms had returned were “So that’s what normal feels like!”  I had forgotten how it felt not to experience disabling pain and trembling in the legs.  They had become such a part of my life, that without it, it felt almost strange (although was welcome if it was only for a couple of days!

However that it is not to say I have always experienced these particular troublesome symptoms or to this degree as I haven’t, although I had struggled with them for so long now I am unable to recall when they first started.  That’s the thing with living with a chronic illness; the unusual and disabling symptoms soon become the norm and part of our daily lives.  Life with chronic illness slowly become our new normal.

[Tweet “That’s the thing with chronic illness; the abnormal slowly becomes our new normal.”]

A lot of people have experienced some moment in their lives when it feels that their lives have been divided into a before and after, whether it be through a bereavement, injury, illness or some other life event. A moment in their lives where they have to adapt to a new normal, the lives which they once knew becomes a chapter in someone else’s story.

Image: Google
Image: Google

Perhaps what is most difficult when living with a chronic illness is that we intermittently experience a glimpse into our lives before illness struck and its onset of debilitating symptoms.  Times when our symptoms are mild, or even nonexistent and reminding us of our old normal.

[Tweet “The times when our symptoms are mild, we are briefly reminded what our normal looked like.”]

However, this preview of our ‘before illness’ soon ends and again we’re back to our new reality of pain, fatigue and the other symptoms that make up our conditions.  It’s we have a brief glimpse into an old, familiar room before a door being slammed shut before we had a chance to step inside and familiarise ourselves with our past surroundings. A preview of an old life that although can be seen it is out of our grasp.

When given a chance to experience aspects of our past life, however, what is most surprising is that it no longer feels normal, it feels odd as if that life no longer belongs to us.  When living with chronic illness, the abnormal soon becomes the norm and without us even realising, we forget about our old normal.  When experiencing our old normal, therefore, it feels unnatural and strange, as if that life no longer fits.

The new normal just becomes normal; erasing our past life and who we once were paving the way for life with a long-term condition and who we are now.

by
Keep Reading
In Chronic Illness

Sailing Away to Acceptance…

No Comments

How does the old saying adage go?  What a difference a year makes. And, my recent experiences can only substantiate this.

Regular readers of the blog will remember that last year, I experienced my very first cruise and that unfortunately, it did not go as well as my parents and I had hoped.

The symptoms associated with this neurological condition were consistently present and remarkably severe that it affected my enjoyment of the holiday and also left me unable to disembark the ship and see the beautiful places that I was so looking forward to visiting.

Fast forward a year (okay more like a year and a half), and I am back from yet another cruise! Why go on a cruise when the first one did not go well, I hear you ask.

Well, the large part of the reason why I decided to go another cruise, is that I refuse to let the neurological condition that I live with have any more control over my life than it already has.  I came across, a perfect quote that sums this up brilliantly; this quote says “Life begins at the end of your comfort zone.”

And it is true, if we only stayed within the confines of our comfort zones then we would never know what we can be capable of, or what we can achieve when given a chance.

[Tweet “If we only stayed inside our comfort zone we would never learn what we are capable of.”]

comfortzone-quote
The symptoms that are as a result of the brain stem lesion already makes life difficult, for example, visiting certain types of places such as those with high ceilings and fluorescent lighting are very challenging for me as they increase the severity of symptoms such as dizziness and vertigo.

As a result, I do not wish for my condition to stop me from doing anything else that I want to do, including taking trips abroad.

Flying and therefore requiring to spend hours waiting in an airport would not be compatible with my symptoms so consequently, a cruise offers an alternative for me to be still able to travel. Furthermore, the rational side of me also realised that although I found the first cruise particularly difficult, it does not necessarily mean that I would have the same experience on future cruises.
IMG_0007
Back last year, just a few months after arriving back from the Mediterranean, my parents and I booked a second cruise with Royal Caribbean on their brand new ship Anthem of the Seas travelling this time around the Canary Islands (as well as stops in Spain and Portugal).  And I am so glad that I did!

This cruise went much better than the last one and even managed to get off the ship twice, leading to spending a few hours perusing the streets of Tenerife and Madeira.

The process of disembarking the ship and then having to find our way to wherever we wanted to visit was not easy especially giving the severity of the symptoms, but I still managed to push through and achieve something I did not think I could do.  To some, getting off at only two stops may not seem like much, but fellow spoonies would appreciate the enormity of this feat, especially when battling constant and unrelenting symptoms.

Anthem of the Seas is a fantastic and beautiful ship, and Royal Caribbean has seriously gone hi-tech.  Before embarking on the cruise, we bought an internet package, and was impressed with the speed of the bandwidth, enabling me to stream movies and television programmes on my iPad occupying my time when fatigue set in (which was a lot!.

The WOW factor did not stop there, however; all over the ship, there was amazing artwork to marvel at, often feeling like Alice landing in Wonderland.  What I love about Royal Caribbean, is the thought that has gone into the design of their ships; all public areas are fully accessible and have automatic doors making it easy for those in wheelchairs to be able to navigate their way around the boat unaided.

The food was also stunning and particularly loved having a wide variety of choice of where to have dinner.  We sampled the delights of the majority of the complimentary restaurants onboard but spent most nights dining in the American Icon Grill.  One night, however, we chose to pay extra and ate at Jamie’s Italian where the food was delicious and the staff attentive and friendly.

The highlight of the cruise for me, being a fan of Queen was seeing We Will Rock You, which was incredible and rivaled any West End show.  My Mum and I also paid extra to use the facilities in the spa, which included an aromatherapy steam room and sauna, as well as the use of hotbeds which not only did I find incredibly relaxing but also really helped ease the often excruciating pain in my legs.

Beautiful sunset
Beautiful sunset

Strange though isn’t it?  Last year, I was unable to get off the ship and generally found the whole cruise experience extremely difficult.

A year on, however, and despite my symptoms not improving in that time I found this holiday much more comfortable, even managing to push the boundaries of my comfort zone.

Why is this? Perhaps the reason is that during the past since the first cruise I have managed to push myself further, expanding the perimeter of the small world that my neurological condition has forced me inside.  Examples include conquering going to the cinema, a pastime that I used to love but is now extremely difficult for me as a result of my severe and unrelenting symptoms and as a result started to avoid.  By pushing myself to go to places and placing myself into situations that increase the severity of my symptoms, and achieving staying in them, reinforces the belief that I am stronger than my condition and can get through stressful situations.

[Tweet “By going beyond our comfort zones shows us that we are stronger than our illness has us believe.”]

Or perhaps I have reached a new, deeper stage of acceptance.

Accepted the reality of the diagnosis of a long-term neurological condition  – that is not to say that I have given up and surrendered to the disorder but rather let myself go of the suffering that came from continuously fighting against the symptoms and the hold that they had over my life.  I have accepted that I will always have difficulty with certain situations and the majority of things will not be easy for me, but what I can control is my reaction to them, and by doing so I can learn to be in control of my symptoms instead of them controlling me.

[Tweet “Acceptance has helped me learn to be in control of my symptoms instead of them controlling me.”]

Believe. Love, Live, Dream, Inspire - some positive words advice from Royal Caribbean
Believe. Love, Live, Dream, Inspire – some positive words advice from Royal Caribbean

In the end, I had to accept the reality of the symptoms; accept the long-term presence of them in my life.  And by doing so, I no longer fought the presence of the symptoms but acknowledged their present existence at that moment.  I have freed myself from the prison of fighting against the symptoms, and avoiding certain places and situations has placed me in.

By accepting the reality of life with a long-term condition surprisingly made it easier to cope with the symptoms and all of the ups and downs as a result of living with a chronic illness.  I was able to find little coping strategies that helped minimise the effect of the symptoms and help me stay in control of the symptoms rather than the symptoms controlling my life.

Of course, there are days when it feels that the symptoms still have control over my life but by accepting the reality of life with chronic illness, getting through the bad days is easier than before.

Above all, going on holiday on the cruise of a lifetime has made me realise that being diagnosed with a chronic illness, or disability does not spell the end of our lives or even our dreams.

Yes, perhaps the route to which we can reach our goals and dreams may have to change, but we can still reach that final destination.  Chronic illness should not mean the end our dreams; we can still follow them if we took a leap of faith.

[Tweet “We can still achieve our dreams and ambitions if only we took a leap of faith.”]

It is this realisation that I came to while on holiday – if I took the easy option and decided not to go on the cruise then I would never realise the strength and control that I can have over FND and its symptoms.  And if it weren’t for that, then I would never have the opportunity to visit a country that I have wanted to for so long – Norway!

Yes, we have booked yet another cruise for next year to the beautiful and amazing country that is Norway.  And this trip I can look forward to with excitement and positivity instead of anxiety and trepidation.

So all of you reading this – don’t give up on your dreams, believe me, you can still achieve them despite the challenges in your way.

by
Keep Reading
In Chronic Illness

Experiencing Instead of Wishing of Better Days…

No Comments

Around two weeks, I made pre-arranged plans with my personal assistant to go to the cinema.

On the morning of the day of the arranged trip, I found that the symptoms that plague my everyday life were dialled up to the maximum volume on my personal symptom-o-metre.

On these days, I would usually cancel such plans and make the decision to go somewhere safe and familiar – surroundings where I feel comfortable no matter how bad I am feeling, and which are just as comforting as my own home.

Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!
Symptom-o-meter!! From mild angelic experience to severe, devil-like experience of them!

On this day, however, I made the decision to make the journey to the retail park, which our regular cinema is attached, and see how the day was going to pan out.  I made the decision, not to make plans, but instead, if I made it to the cinema than great, however even if I wasn’t well enough to attend, I still had a lovely day away from home, browsing stores and boutiques and indulging myself with a special lunch.

The cinema, as expected did not happen thanks to the unrelenting symptoms that were severely afflicting me, particularly the trembling in my legs that did not allow me to walk around the entire retail complex.

At first, I was thoroughly disappointed in myself and the condition with which I live for wrecking my plans in the overly critical way that I often am in regards to myself.

Although at the time I felt that I lost the battle to my neurological condition, I have come to realise however that this is not the case.  I may not have made it to the cinema, but I did still manage to push through the severe and unrelenting symptoms that I was experiencing and go to a place that can often make me feel uncomfortable due to the size of the place which can often worsen the dizziness that is part of my chronic illness package.

Perhaps by winning certain battles in our lives with chronic illness we can find ways around certain problems to win the battle another time
Perhaps by winning certain battles in our lives with chronic illness, we can find ways around certain problems to win the battle another time

Chronic illness often wins many battles in our lives; however, it does not win all of the battles.  There are many battles that we win; many times we prize the triumph away from the hands of chronic illness and are victorious over defeat.

Think about the last very bad day you had due to chronic illness…

  • Did you still manage to get out of bed?
  •  Go for a shower?
  • Do small chores around the house?

If yes, then congratulations, you triumphed over your illness.

It’s a small victory, but a victory nonetheless.  We need to celebrate and appreciate these small accomplishments as just that – victories over our illnesses that already take so much from our lives, and accomplishing such feats can often feel that we are taking back some control that chronic illness can steal away.

That is partly the reason for choosing to go out when it would have been easier to stay within the confines of the four walls where I feel safe when the symptoms are it’s worse.  I did not want my neurological condition to control my life and dictate how I spend my time.  I want to enjoy life, and not feel that I merely surviving through life as a result of living with a neurological condition. I want to enjoy life and be happy instead of being stuck inside the same four walls with only my symptoms for company and hoping for better days ahead.

Furthermore, the triumphant day out also taught me that I am a lot stronger than I think I am; and that the symptoms do not have to have as much control as I often choose to give them.  That I am able to take risks and go to places that I did not think I could, as Ophelia says Shakespeare’s, Hamlet:

we know what we are, but know not what we may be

We know what our lives are with chronic illness and as an extension who we are because of it.  Perhaps we need to step out of the box that chronic illness imprisons us into to find out what our lives can be like, if and when we choose to take back control that illness removes from our lives.  Who we can be when we refuse to let illness have the main spotlight in our lives.

If we did, who knows where we may end up?
160bdfb7720daf3bd2411a0f9ad7528a

by
Keep Reading
Pin It